Rare Disease Day

Rare Disease Day is today February 28, 2014.  



We are blessed, we know someone, actually a few someones, with rare diseases.  Most would not see it as a blessing, but we see the perfect love of God shining in their eyes.  Look close and you will too.


Every week day I get to scoop up and cuddle a little bundle of energy and joy, tickle him until he belly laughs, and tuck him in for naps.  My kids get to help him stand and take shaky steps, they dodge the cheerios he throws(much to the delight of our dogs) and applaud his new found potty skills.  We are blessed by his determination, his sense of humor and his joy in the simplicity of watching the sun beams and shadows cross the floor.  Goodnight Moon was the first book Little Man ever read, at the prompting of this bundle of joy, and so Little Man read it, from cover to tattered cover, many times over, these two special boys, such a blessing.

Filling in, helping out, taking care of and for, these are all blessings my children have learned, lessons they live because of a child with a rare disease.  All of the ups and downs, fun and heartache, they have lived with these kids.  Yes, there are more than one of them, we know a few kids with rare or challenging diseases, and each is a blessing of their own.

I can confidently say that we have been more blessed than blessing to the families of these kids, my children have learned more grace, patience, creativity and gentleness from these friends than could ever be learned in another setting.  The lessons learned in this life we lead, alongside these friends will be lessons for a lifetime, and should there be an emergency my kids are the ones you want there, they can keep it together in a moment of crisis, they have had lots of practice!!

To those who have a child with a rare disease I pray for comfort and peace for you, and your child.  For those who know a child such as these, spend time with them, sit back and watch the clouds drift by, soak in the joy and zest that they take in life.  Yours will be a better day for having spent time with them, I know, because I get that every day, and am eternally thankful for the gifts and lessons I receive.

2 comments for “Rare Disease Day

  1. Jane
    2 March, 2014 at 12:05 pm

    Very cool 🙂 I don’t know if you are following the Iditarod, but check out this bio on one of the mushers – http://iditarod.com/race/2014/mushers/974-Cindy-Abbott/. I found this SO inspiring, and she is an advocate for NORD.

    • 2 March, 2014 at 6:55 pm

      Thanks Jane I will have to check that out!!!

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